Download: PDF RTF XML Booklet: Review (0) Retrieve Add item
Rare craniofacial anomalies and ENT disorders [CRANIO] [811672] - Operating Grant
Project abstract

In the second year of the ERN CRANIO, we will continue to work on sharing knowledge and expertise within our current network of 29 HCP's from 11 countries. It is most likely that we will expand our network in 3 different ways: 1. from within by expanding the field of expertise from participating HCP's; 2. with HCPs from new countries, particularly from Eastern Europe, and 3. with additional representative from patient advocacy groups via ePAG.
We have expanded the coverage of diseases somewhat regarding the incorporated ENT disorders, by including congenital nasal en neck anomalies.

The workpackages management, guidelines and standards of care, eHealth (incorporating CPMS), outcome, education and training, and dissemination will remain the same, but with new set goals for 2018.

There is an urgent need for a registry on craniofacial and ENT malformations, but unfortunately our registry grant application was put on the reserve list. This means that for the next year's budget we will have to include a significant amount of money to finance the start of a registry.